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[KiloKAHN]

Great start so far and good to know your body can handle that amount according to Dr Paley. Btw, how much contact will you have with him throughout your lengthening phase? Are you able to call him any time you wish?

[Grow]

Congratulations Cooper! How are you doing these days? I am new on this forum but have been reading up about LL for a while now. I am keen on getting this surgery done in the US. I think Paley is my first choice. I'm in my 30s and I'm a little nervous about how my body would handle the surgery. What are your thoughts?

[Cooper]

I am about 2.3cm, two millimeters shy away from inch. I will hit one inch in two days. My journey has been incredibly pain free. I never had pain above 4 level, considered very lucky on that regard. I normally take oxycodone (generic Percocet) 5mg twice a day. I probably could do without it but I am working full time and any inconvenience and discomfort hinders my work performance.

I break down this journey in 2 phases. The first one lengthening and second one consolidation. One third down and two third to go.  If I keep my current pace I will be done in August 26th. I am planning to stay here through out. My friend who is helping me out is leaving in July 15th and I will alone. I am talking few guys to come out and help me here see how that goes. If not than I will try to stay strong and fight the battle myself next 43 days.

I have been working full time since the week of surgery. Fulltime meaning 40 hours a week. Some day I work 10 while other 3 or 4. My days goes really fast because I keep myself very busy with work, PT, hot water therapy at bath tub and stretching twice a day at hotel.

I took my first x-ray last week and distraction was exactly as expected 1.6cm from 16 days of lengthening. I will post it later.

[Cooper]

Great start so far and good to know your body can handle that amount according to Dr Paley. Btw, how much contact will you have with him throughout your lengthening phase? Are you able to call him any time you wish?

I have not had much contact with Dr. Paley but I can email him anytime and he responds very quickly. Usually he sees the patient every two weeks when the x-ray is done. On my last x-ray he was out on vacation and I saw his assistant.

Not sure about calling him anytime, I do not have his private phone number. His time is very demanding, may spent half the time at operating theatre. But if there is need  and concerning thing he can be reached. His practice is very well structured. The PT looks at my scars everyday to make sure they are healed and ask plenty questions about my well being, pain level and discomfort.

Few weeks ago I was concerned that my right leg might have infected. I had itchy feeling inside my leg and the PT sent me to talk to physician assistant right way and they looked at it and determined it is nothing but just spams. Advice to drink plenty of water and fiber. 

[Cooper]

Congratulations Cooper! How are you doing these days? I am new on this forum but have been reading up about LL for a while now. I am keen on getting this surgery done in the US. I think Paley is my first choice. I'm in my 30s and I'm a little nervous about how my body would handle the surgery. What are your thoughts?

You will do fine with Dr. Paley. I see mostly young patient here from age ranging from 20-30s. I am probably one of the older ones doing CLL. He has very good setup. The PT staff are very well trained, you are given instruction and just need to follow through out the procedure. I was expecting lot worst but so far the ride has been great. I have still 67% to go...

[Blackhawk]

Thanks for the update Cooper. 

I was hoping to have a job while lengthening as well.  Is it good to be working or would you rather have taken a few months off for LL if you could?

Good luck!

[Cooper]

I am doing very well so far. I should be at 42MM end of the day. I feel bit taller now and the feel is amazing...in one word...priceless!!! I still need to go lot more, cannot wait to be 7 cm taller. I do not know the exact cm of LL, playing by the ear.

Same routine every day. Therapy, work from hotel and hang around with other CLL friends. Past few weeks having ton of fun, drinking and socializing like before the surgery. I feel completely normal and sometime forget I have two broken bones

I am actually going out of town on business for few days next week. I have a friend and together will drive to Tampa. My first business trip after the surgery. I am bit nervous whether I can sit on chair and attend meeting for hours. Will see....but feels great so far. Will be a good break from WPB.

There are lots of patients here in hotel. About 7-9CLL from many different countries. I love going out breakfast in the morning and socializing with LL buddies and their family. I do not eat breakfast every day but when I am out there I do have fun. This has been very good journey so far and I could not ask for better place or doctor. The CLL community is like family and you get bonding pretty quickly. Some of the friends I met here probably will remain good buddies forever. We went through similar pain, experience, stress and fun whenever we can.

I am pretty busy working full time, doing therapy thrice a day. Sometime I only do two. My body get tired and so as my motivation. I see glass more than half full now. Seems like LL thing will be over soon.... Asta la vista....later!

[Cooper]

This is the last one at 30CMs. I am scheduled for Monday and will post that later when time permits....should be around 43cms by then...

[programdude]

Which hotel are you at?

[cavani]

congrats on your smooth journey Cooper 

[Cooper]

I am at Homewood suites.

[Cooper]

I hit 5CM on Sunday July 26th. My muscle are getting tighter at this state. I can sit on a chair for longer that 5-10 minutes. Have to raise a leg. Went to hair cut yesterday and I asked to speed up after 10 minutes. I was very uncomfortable and was moving side to side. With the leg raise I am comfortable.

I feel home at the hotel. After 2 months of stay. We go swimming together, watched movie in group some time. It's been really fun with other patient.

One piece of advice- bring a friend or family for the first 30-40 days. You will need someone. It is very hard to do this surgery alone.

[TRS]

Stay strong you're nearly there bro. Happy for you  :

[Cooper]

I hit 6CM few days ago. Planning on lengthening about 6.7CM on right and 7.1CM on left. I should be done this Sunday. My last x-rays looks really good. Dr. told me I could go to 8cm but I think that will be too much. I been feeling tightness after I passed 5cm and it will take superb effort to lengthen 8cm. I been lazy this past week, catch mild cold and was coughing every now and then. I am tired of physical therapy, staying at the hotel and looking forward to going back home.
 
I am clear to go home and therefore leaving WPB this FRIDAY. I will lengthen few days at home. I have no pain and my leg feel stronger. I have not taken any pain medication since last three weeks. I do not have any pain...knock on wood .  I take Z quill every night to aid sleep. My sleeping has been better, I do wake up at night mostly one time and fall right back to sleep.

 

[Cannibal]

Without a doubt you've gone to the best surgeon for this procedure.

[programdude]

I hit 5CM on Sunday July 26th. My muscle are getting tighter at this state. I can sit on a chair for longer that 5-10 minutes. Have to raise a leg. Went to hair cut yesterday and I asked to speed up after 10 minutes. I was very uncomfortable and was moving side to side. With the leg raise I am comfortable.

I feel home at the hotel. After 2 months of stay. We go swimming together, watched movie in group some time. It's been really fun with other patient.

One piece of advice- bring a friend or family for the first 30-40 days. You will need someone. It is very hard to do this surgery alone.

I Wish I had followed this advice- but instead plunged into it. I'm not quite at the 30 day mark but someone close to me would have been a lifesaver.

[Plzen]

Congrats on the height gain. Do you walk with help of crutches? How is your walking?

[Grow]

I hit 6CM few days ago. Planning on lengthening about 6.7CM on right and 7.1CM on left. I should be done this Sunday. My last x-rays looks really good. Dr. told me I could go to 8cm but I think that will be too much. I been feeling tightness after I passed 5cm and it will take superb effort to lengthen 8cm. I been lazy this past week, catch mild cold and was coughing every now and then. I am tired of physical therapy, staying at the hotel and looking forward to going back home.
 
I am clear to go home and therefore leaving WPB this FRIDAY. I will lengthen few days at home. I have no pain and my leg feel stronger. I have not taken any pain medication since last three weeks. I do not have any pain...knock on wood .  I take Z quill every night to aid sleep. My sleeping has been better, I do wake up at night mostly one time and fall right back to sleep.

How are you doing, Cooper? Are you back home? It must be great to be done! What was final increase, did you stop at 7? I can't wait to get my surgery scheduled and get started!

Good luck with the next stage!

[Cooper]

I got home last week. I gained 6.5 on right and 6.9 on left. My legs feel great right after I stopped lengthening. I can stay in a chair for long hours 4-5 months. I am on crutches. I cook sometime but will need help to transfer stuff. I do PT at home and swimming almost everyday. I skip swimming when raining.

I will do my x-Ray around 15th sep. my callous looks great and may able to put full weight bearing in about 3 weeks. I am feeling more normal and more strong everyday.

[TRS]

I got home last week. I gained 6.5 on right and 6.9 on left. My legs feel great right after I stopped lengthening. I can stay in a chair for long hours 4-5 months. I am on crutches. I cook sometime but will need help to transfer stuff. I do PT at home and swimming almost everyday. I skip swimming when raining.

I will do my x-Ray around 15th sep. my callous looks great and may able to put full weight bearing in about 3 weeks. I am feeling more normal and more strong everyday.

This is great news! Congratz on finishing distraction.
You had a very smooth LL journey and hopefully mine goes the same as yours
Are you allowed to walk and full weight bear on both legs because I heard that the nails are at it's weakest point after full distraction?
Do you plan to lengthen your tibias as well?

[Col92]

Thanks for the positive posts. Do you think the amount you gained is fine proportion wise? Temptation to get maximum allowed but differing opinions on whether it looks strange.

[Cooper]

This is great news! Congratz on finishing distraction.
You had a very smooth LL journey and hopefully mine goes the same as yours
Are you allowed to walk and full weight bear on both legs because I heard that the nails are at it's weakest point after full distraction?
Do you plan to lengthen your tibias as well?

I have temptation to do tibia but not sure when and how. I like my original plan if 6.5 and 5cm. My proportion looks fine and can't even tell. No one will notice. Beautiful part of doing 6.5 is muscle adapts pretty well. I have no stretching or any soft tissue issue. I am not allowed to full weight bearing just yet. I use crutches everywhere. I went to watch November man yesterday and no problem at all sitting on chair for long time. I will take my X-ray in 2 weeks and hope dr. Paley will let me walk unaided.

[shortkid]

Hey cooper! Happy to here an update from you and glad everything is going well! I have my consultation with paley on the 4th and I am flying in tonight. Do you think we can meet up so I can ask some questions and hear about your experience? Im staying at the homewood. Thanks!

[shortkid]

I got home last week. I gained 6.5 on right and 6.9 on left. My legs feel great right after I stopped lengthening. I can stay in a chair for long hours 4-5 months. I am on crutches. I cook sometime but will need help to transfer stuff. I do PT at home and swimming almost everyday. I skip swimming when raining.

I will do my x-Ray around 15th sep. my callous looks great and may able to put full weight bearing in about 3 weeks. I am feeling more normal and more strong everyday.

Nvm just saw your home now. What made you decide to not do 8cm? Anyway you could post a picture of your new proportions? What is your sitting height? Thanks for answering!

[shortkid]

Sorry forgot one more question, how is your height neurosis now? Still feel short or do you feel confident!!?

[Cooper]

Short kid- I do feel bit taller than before. With crutches can't say whether height neurosis is completely gone. But when I think of height I feel much better, warm and not so depress.
I think 8cm is too much IMO especially with small guys. If you are 160-164 than it is tough to pull but not impossible.

I was worried about femur getting too long and also consolidation time and losing athletic ability. I need to get back to sport at least 90/95% otherwise I might get depress. Sport is big part of my life and I did not want that to go for 1cm gain.

I think the best thing about dr. Paley is the dedicated PT staff. I never lost range of motion and my therapist was super nice. I miss them and many other friend I met at WPB.

[shortkid]

do you mind telling me your sitting height? We have very similar starting heights so I am curious

[Plzen]

I hope you are doing well Cooper.
In your earlier post you mentioned that you were going to have an x-ray on sept 15. How was your x-ray. I hope good news.
Are you still using crutches?
You are the only post-lengthening precice patient on this forum (that I know of), your answers are truly appreciated.

[Cooper]

Thanks for following up Plzen. I did the x-ray on the 9th. It is healing really well, but, unfortunately not ready to full WB. Dr. Paley allowed me to put on about 100lbs on each leg and still advised to be on crutches. I think I will be off crutches in about 3 weeks.

Everything else is going as normal. The surgery has not impacted anything other than normal walking. I can stay long hours in office, have gone to theatre and watched movies. I do feel my leg are getting stronger and possibly walk without crutches but cannot test the water. The risk is too high.

[Plzen]

It is great that you can do more things. Do not worry, 3 weeks will be over before you know. It is better to be safe than sorry.
Is standing straight a problems, any major muscle stiffness? Are you using any pain pills? Sleep ok?
Do you still see a physical therapist? Can someone get away with not having a physical therapist after lengthening, granted he will do all the exercises himself?

[Cooper]

Update 10/19/2014

I am crutches free now. It's been two about weeks and feels great. It was not easy at day 1. I felt uncomfortable, little bit pain on hip area. Plus my brain certainly was not accepting the fact I can walk normal. It took exactly 4 months post op to ditch the crutches. The last two weeks been great....in one word...AWESOME!  I am doing pretty much everything except running and sports. I can walk up and down stairs with one leg no problem. I was very careful for few days but not no issue there.

I think my journey was one of the easiest one. I was preparing for worst but lucky me I guess.  I had no pain whatsoever. Reflecting back, my biggest pain was first bowl movement and the first IT band stretching. Other than that I was sailing very well from the get go. Importantly I worked the whole time and no loss of income in most part.  I think I will return back to full athleticism. I am planning on playing sport in 2 months from now but will definitely check with Dr. Paley before.

I am considering tibia...lengthening is addictive I am not sure where and what method. I prefer not to spend another $100K again plus want to be stress free. I was paranoid all the time about any complication/nail bending/malfunctioning et cetera. Honestly many times I forgot about partial WB. Several times I stand in ONE FEET and I even walked once while lengthening. Ok, I was not testing it was accidental. One time I was tying my shoe lace with one feet on ground and another one on car door lol.  I forgot I had precise nail in my body...no pain whatsoever.  I was so stressed until I saw my x-ray and everything was in control.

I prefer doing LATN/LON on my tibia for several reason. 1) Mobility right after lengthening. Most people walk without crutches in 2-3 weeks 2) Piece of mind. More control over the lengthening mechanism. Planning on 5/5.5cm on tibia to keep the proportion.